› Forums › General Melanoma Community › Week 8 on Zelboraf and good scans
- This topic has 21 replies, 7 voices, and was last updated 11 years, 11 months ago by
Tina D.
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- May 31, 2012 at 2:27 am
I had my first scans today after starting Zelboraf 8 weeks ago. had to go to 1/2 dose in the first 10 days because of skin reactions and 3 weeks ago began adding back one pill a week. today I'm hat 4 pills in the am, 3 at night. I've only had 3 days of joint pain. I'm losing some hair, head hair is changing texture, i have a ton of skin tags and most of my moles are changing. when we started this I had a collapsed upper left lobe, panted to breathe and coudln't finish a sentence.
I had my first scans today after starting Zelboraf 8 weeks ago. had to go to 1/2 dose in the first 10 days because of skin reactions and 3 weeks ago began adding back one pill a week. today I'm hat 4 pills in the am, 3 at night. I've only had 3 days of joint pain. I'm losing some hair, head hair is changing texture, i have a ton of skin tags and most of my moles are changing. when we started this I had a collapsed upper left lobe, panted to breathe and coudln't finish a sentence. i was pretty sick and pretty worried. I had one 3.5cm met, most of the many others were pretty small but too many to count. Today almost all the right lung is clear, the left lung has very few observable mets and the 3.5 cm one that was blocking the airway is about half that size and the airway is unobstructed and the lobe has reinflated. and I feel great. other than increasing sun sensitivity i've begun doing "retirement" things. My radiation onc dr called 4 hours after the CT scans were done. I have great skilled compassionate docs, a great supports system, people all over the world praying for me. I'm a very fortunate many. I hope all of us get to this point and better. I'm eager to see what comes out after the ASCO conference next week. and I'm thankful to have found this board.
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- May 31, 2012 at 12:31 pm
Happy that the "Z" is kicking some ass on your melanoma. Hoping that it only gets better so you can do all of the retirement things.Till you and all of us are NED you are in my prayers. Al
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- May 31, 2012 at 2:26 pm
Glad to hear it's working for you!! Just started "Z" last night. So no side effects to report yet – but have been making sure to put my sunscreen on!
I was started on it because last year I had 12+ nodules in my lungs. Tried to do the Zelboraf trial but by the time they scanned me – they were all gone. (2 were removed by a VAT's procedure to biopsy). Had been clear for 1 year 2 months when my May scans showed a 4.5 cm section of my small intestine that had 'significant thickening' and the lymph nodes around were swollen. Oh and I got hopsitized last week for low hemoglobin (it was down to 5.6). So doctor wanted to start me immediately on Zelboraf. I had some reservations since I was feeling ok and wanted a biopsy – but after many discussions with them decided to go ahead and just start!
Positive thoughts and prayers your way! Hope it continues to work!!
Erin
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- May 31, 2012 at 2:26 pm
Glad to hear it's working for you!! Just started "Z" last night. So no side effects to report yet – but have been making sure to put my sunscreen on!
I was started on it because last year I had 12+ nodules in my lungs. Tried to do the Zelboraf trial but by the time they scanned me – they were all gone. (2 were removed by a VAT's procedure to biopsy). Had been clear for 1 year 2 months when my May scans showed a 4.5 cm section of my small intestine that had 'significant thickening' and the lymph nodes around were swollen. Oh and I got hopsitized last week for low hemoglobin (it was down to 5.6). So doctor wanted to start me immediately on Zelboraf. I had some reservations since I was feeling ok and wanted a biopsy – but after many discussions with them decided to go ahead and just start!
Positive thoughts and prayers your way! Hope it continues to work!!
Erin
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- May 31, 2012 at 2:26 pm
Glad to hear it's working for you!! Just started "Z" last night. So no side effects to report yet – but have been making sure to put my sunscreen on!
I was started on it because last year I had 12+ nodules in my lungs. Tried to do the Zelboraf trial but by the time they scanned me – they were all gone. (2 were removed by a VAT's procedure to biopsy). Had been clear for 1 year 2 months when my May scans showed a 4.5 cm section of my small intestine that had 'significant thickening' and the lymph nodes around were swollen. Oh and I got hopsitized last week for low hemoglobin (it was down to 5.6). So doctor wanted to start me immediately on Zelboraf. I had some reservations since I was feeling ok and wanted a biopsy – but after many discussions with them decided to go ahead and just start!
Positive thoughts and prayers your way! Hope it continues to work!!
Erin
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- May 31, 2012 at 12:31 pm
Happy that the "Z" is kicking some ass on your melanoma. Hoping that it only gets better so you can do all of the retirement things.Till you and all of us are NED you are in my prayers. Al
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- May 31, 2012 at 12:31 pm
Happy that the "Z" is kicking some ass on your melanoma. Hoping that it only gets better so you can do all of the retirement things.Till you and all of us are NED you are in my prayers. Al
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- May 31, 2012 at 2:58 pm
Great news, thx for posting. I have been on Zelboraf for about two weeks along with a MEK inhibitor as part of a clinical trial. Sun sensitivity kicked in right away. Starting to experience skin rashes, hand/foot syndrome, etc. all tolerable right now!Hope you continue to have good results!
Eileen L
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- May 31, 2012 at 2:58 pm
Great news, thx for posting. I have been on Zelboraf for about two weeks along with a MEK inhibitor as part of a clinical trial. Sun sensitivity kicked in right away. Starting to experience skin rashes, hand/foot syndrome, etc. all tolerable right now!Hope you continue to have good results!
Eileen L
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- May 31, 2012 at 2:58 pm
Great news, thx for posting. I have been on Zelboraf for about two weeks along with a MEK inhibitor as part of a clinical trial. Sun sensitivity kicked in right away. Starting to experience skin rashes, hand/foot syndrome, etc. all tolerable right now!Hope you continue to have good results!
Eileen L
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- May 31, 2012 at 3:10 pm
WHAT GOOD NEWS ON "ZEL" ! I am happy to hear you can BREATHE…that had to be nasty.
Hubby is in 5th week of full dose (4 tabs 2 X D) and was hospalized the second week on it from high fevers caused
from getting in the sun too much. HE LEARNED QUICKLY = NO SUN, and don't get overheated doing anything ! They did scans etc. to make sure something else wasn't wrong. In only 2 weeks on ZEL, his largest tumor 2.6 – had shrunk to 1.8. Dr. B at MDA was estatic. SOWERE WE !
He will do PET and other scans June 13th and SEE what is really going on now. It will be 7 weeks on ZEL at that visit. Your post is encouraging to us and we wish you the very best with it. Please KEEP US UPDATED, and thanks for sharing – every post like this encourages everyone.
BLESSINGS AND HEALTH TO YOU
PRAYER WORKS !!!!!!!!! 🙂
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- May 31, 2012 at 3:10 pm
WHAT GOOD NEWS ON "ZEL" ! I am happy to hear you can BREATHE…that had to be nasty.
Hubby is in 5th week of full dose (4 tabs 2 X D) and was hospalized the second week on it from high fevers caused
from getting in the sun too much. HE LEARNED QUICKLY = NO SUN, and don't get overheated doing anything ! They did scans etc. to make sure something else wasn't wrong. In only 2 weeks on ZEL, his largest tumor 2.6 – had shrunk to 1.8. Dr. B at MDA was estatic. SOWERE WE !
He will do PET and other scans June 13th and SEE what is really going on now. It will be 7 weeks on ZEL at that visit. Your post is encouraging to us and we wish you the very best with it. Please KEEP US UPDATED, and thanks for sharing – every post like this encourages everyone.
BLESSINGS AND HEALTH TO YOU
PRAYER WORKS !!!!!!!!! 🙂
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- May 31, 2012 at 3:10 pm
WHAT GOOD NEWS ON "ZEL" ! I am happy to hear you can BREATHE…that had to be nasty.
Hubby is in 5th week of full dose (4 tabs 2 X D) and was hospalized the second week on it from high fevers caused
from getting in the sun too much. HE LEARNED QUICKLY = NO SUN, and don't get overheated doing anything ! They did scans etc. to make sure something else wasn't wrong. In only 2 weeks on ZEL, his largest tumor 2.6 – had shrunk to 1.8. Dr. B at MDA was estatic. SOWERE WE !
He will do PET and other scans June 13th and SEE what is really going on now. It will be 7 weeks on ZEL at that visit. Your post is encouraging to us and we wish you the very best with it. Please KEEP US UPDATED, and thanks for sharing – every post like this encourages everyone.
BLESSINGS AND HEALTH TO YOU
PRAYER WORKS !!!!!!!!! 🙂
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- June 1, 2012 at 5:42 am
Great response! Celebrate and continue your success 🙂
Hope
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- June 1, 2012 at 5:42 am
Great response! Celebrate and continue your success 🙂
Hope
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- June 2, 2012 at 2:59 am
Glad to hear this great report 🙂 . I am now finished with my 7th day on the reduced dosage of 3 in am/ 3 in pm. Joint pain and pain in soles of feet began yesterday, but it is totally tolerable. The photosensitivity never went away, so I am avoising the sun compleely for now. No problem with rash thus far, thankfully, since that was the reason I had to go off the full dose for 2 weeks. Very very glad you are celebrating encouraging news. And, I am thankful for this forum where we can hear abt how others are doing and what they are experiencing. Thanks for sharing!
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- June 2, 2012 at 2:59 am
Glad to hear this great report 🙂 . I am now finished with my 7th day on the reduced dosage of 3 in am/ 3 in pm. Joint pain and pain in soles of feet began yesterday, but it is totally tolerable. The photosensitivity never went away, so I am avoising the sun compleely for now. No problem with rash thus far, thankfully, since that was the reason I had to go off the full dose for 2 weeks. Very very glad you are celebrating encouraging news. And, I am thankful for this forum where we can hear abt how others are doing and what they are experiencing. Thanks for sharing!
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- June 2, 2012 at 2:59 am
Glad to hear this great report 🙂 . I am now finished with my 7th day on the reduced dosage of 3 in am/ 3 in pm. Joint pain and pain in soles of feet began yesterday, but it is totally tolerable. The photosensitivity never went away, so I am avoising the sun compleely for now. No problem with rash thus far, thankfully, since that was the reason I had to go off the full dose for 2 weeks. Very very glad you are celebrating encouraging news. And, I am thankful for this forum where we can hear abt how others are doing and what they are experiencing. Thanks for sharing!
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- June 1, 2012 at 5:42 am
Great response! Celebrate and continue your success 🙂
Hope
Tagged: cutaneous melanoma
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